The evolution of CML management: why is patient engagement more important than ever?

21 Jun 2019

This article has been developed and funded by Incyte Biosciences International Sàrl (“Incyte”). Incyte has had full editorial control over the content.

Twenty years ago, long-term survival in chronic myeloid leukaemia (CML) was possible, but not commonplace. Today, progress in treating the disease has brought about a new set of patient needs. Professor Gianantonio Rosti of the Institute of Haematology Seràgnoli at the University of Bologna shares his thoughts on how we can continue to optimise health outcomes for CML patients who are generally living long and healthy lives.

1. How has the treatment of CML evolved in the 21st century?

CML is a disease that has seen a tremendous amount of progress in the last twenty years. The biggest breakthrough came when tyrosine kinase inhibitors (TKIs) were first introduced in 2001.1 TKIs are a type of orally administered therapy and are still, to this day, standard treatment for this disease.2

The natural history of CML comprises three clinical phases: chronic, accelerated and blast phase.3 The initial chronic phase has been easy to control with the use of nonspecific chemotherapy agents and TKI-based regimens.4 Without appropriate treatment, the disease can transition into an unstable course (accelerated phase) and by this point the aggressive final phase (blast crisis) becomes unavoidable.4,5

The targeted approach offered to us by TKIs has altered the natural history of CML, improving 10-year survival rates from approximately 20% two decades ago to around 85-90% today.4 Moreover, in older patients the survival expectation is similar to their healthy, age-matched counterparts.

2. What impact has this had on the lives of CML patients?
CML is considered to be a relatively rare blood disorder. In Europe, the prevalence is about 1 per 100,000, with an estimated 6,370 new CML cases per year.6,7 Nine out of ten people are diagnosed with CML in the chronic phase, but with the availability of today’s TKIs, most will never progress beyond this phase, living long and healthy lives.4,8

Current CML treatment guidelines recommend that most patients who achieve remission with TKI therapy continue taking the treatment indefinitely.8 While it can be a relief for patients to find out that CML can be managed for a long time if therapies are taken appropriately, it is also normal for patients to experience ongoing symptoms and side effects of treatment. Fatigue, weight loss, abdominal swelling and bone pain can impact patients on a daily basis.8 It is also common for CML patients to experience emotional problems such as anxiety, depression and social isolation.9

Moreover, patients may need to adjust their lifestyle as a result of their CML, disrupting their working life, socialising and relationships.9

3. What are current considerations when managing CML patients?
The role of patient empowerment and self-care is pronounced in the management of CML because standard care for many patients requires lifelong medication with oral therapy.10 The success of CML treatment depends on a high degree of patient involvement and motivation, together with a strong support infrastructure.10

As patients live longer with CML, attention has shifted to long-term management plans, with a particular focus on quality of life. Evidence suggests that patients actively involved in their health may have a better quality of life than those who are passive.11 For example, when patients become more knowledgeable and informed about CML and its treatments they tend to feel more hopeful and better able to cope with the uncertainty that comes with living with cancer.11

Treatment-related side effect burden is another factor that can negatively impact quality of life and is a major reason for CML patients not adhering to their TKI therapy.8 Providing patients with the tools to log the physical and emotional aspects of their own health and to efficiently engage with their clinician can help to boost adherence and satisfaction on treatment.10

As CML patients continue to live longer and stay on TKI therapy for many years,8 patient empowerment and the assessment of quality of life measures will continue to grow in importance for achieving better health outcomes.10      

It should be noted that self-care is not a replacement for regular physician monitoring of CML patients. Actively monitoring CML patients is critical because tracking information such as molecular response can alert clinicians to the early signs of potential resistance to TKI therapy or change in response.12 However, patients who take a more hands-on approach to managing their disease can help to drive more informed decision-making, while relieving time and financial strains put on healthcare teams.13,14

4. What is CML Life?
For patients to take control of their own health, they must have the desire, resources and self-assurance to accomplish self care.10 Patient tools and information, as well as personal goals (alongside treatment), should be incorporated into long-term management plans.10

I was recently involved in setting up CML Life ( to meet this need. CML Life is a free online platform and app, co-created in collaboration with CML patients, CML experts and health psychologists, for everyone affected by CML - including carers and families. The platform aims to improve the experience and wellness for people living with CML.    

5. How does the platform help patients manage their CML?
CML Life contains a suite of features:

  • Personalised, up-to-date information and news on all aspects of CML
  • CML patient experiences from people living with CML all around the world
  • Mindfulness podcasts developed especially for CML Life by leading health psychologists with a special focus on wellness in CML
  • A health tracker offering a sharable, personalised digital record of tests and treatment-related stats (complete blood count, polymerase chain reaction results, liver and kidney function) 
  • Wellbeing and health literacy questionnaires providing insights into how your CML patients are doing at home and helping them to gain confidence in understanding their disease and treatment
  • A discussion guide enabling your CML patients to have more meaningful and insightful conversations with you

Giving CML patients the resources to self-manage their disease is paramount in improving their quality of life and health outcomes,10 while making better use of your time and resources.13,14 CML Life can assist you in optimally supporting your CML patients, and I regularly recommend the platform to my patients.

Date of prep: June 2019


1 European Medicines Agency (EMA). EPAR summary for the public: Glivec (imatinib). Available at: Last accessed: May 2019
2 Cortes, J. Chronic myeloid leukemia: sequencing of TKI therapies. Hematology Am Soc Hematol Educ Program. 2016 Dec 2; 2016(1): 164–169
3 Arber, D.A. The 2016 revision to the World Health Organisation classification of myeloid neoplasms and acute leukaemia. Blood. 2016. 127: 2391-2405
4 Jabbour, E. Chronic myeloid leukaemia: 2018 update on diagnosis, therapy and monitoring. Am J Hematol. 2018. 93(3): 442-459
5 Radich, J, Major progress in understanding progression in chronic myeloid leukemia. JEM. 2015. 212 (10): 1482
6 Hoffman, V.S. Incidence of CML in Europe – a comparison of 19 European countries with US SEER data. Blood. 2014. 124: 3,145
7 Hoffman, V.S. The EUTOS population-based registry: incidence and clinical characteristics of 2904 CML patients in 20 European Countries. Leukemia. 2015. 29: 1336-1343
8 Hochhaus, A. Chronic myeloid leukaemia: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Annals of Oncology. 2017. 28(4): 41-51
9 Buzaglo, J. S. Medication adherence among patients with Chronic Myeloid Leukaemia: The Impact of financial burden and psychosocial distress. Journal of Oncology Navigation & Survivorship. 2017. 8(4)
10 Coleman, M. Patient empowerment in the management of Chronic Myeloid Leukaemia. Clin J Oncol Nurs. 2014. 18(2): 12-18
11 Guilhot, F. The patient journey in chronic myeloid leukaemia patients on tyrosine kinase inhibitor therapies: qualitative insights using a global ethnographic approach. Patient. 2013. 6(2): 81-92
12 Soverini, S et al. Best practices in Chronic Myeloid Leukaemia monitoring and management. The Oncologist. 2016. 21: 626-633
13 Burns, R. Economic burden of malignant blood disorders across Europe: a population-based cost analysis. The Lancet Haemotology. 2016. 3(8): e362-70
14 Krist, A. H. Engaging patients in decision-making and behaviour change to promote prevention. Stud Health Technol Inform. 2017. 240: 284-302